Creation of a Decision Support Tool for Expectant Parents Facing Threatened Periviable Delivery: Application of a User-Centered Design Approach

Brownsyne Tucker Edmonds (), Shelley M. Hoffman, Dustin Lynch, Erin Jeffries, Kelli Jenkins, Sarah Wiehe, Nerissa Bauer and Miriam Kuppermann
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Brownsyne Tucker Edmonds: Indiana University School of Medicine
Shelley M. Hoffman: Indiana University School of Medicine
Dustin Lynch: Indiana Clinical and Translational Sciences Institute, Indiana University School of Medicine
Erin Jeffries: Indiana University School of Medicine
Kelli Jenkins: Indiana Clinical and Translational Sciences Institute, Indiana University School of Medicine
Sarah Wiehe: Indiana Clinical and Translational Sciences Institute, Indiana University School of Medicine
Nerissa Bauer: Indiana Clinical and Translational Sciences Institute, Indiana University School of Medicine
Miriam Kuppermann: University of California

The Patient: Patient-Centered Outcomes Research, 2019, vol. 12, issue 3, No 6, 327-337

Abstract: Abstract Background Shared decision-making (SDM) is optimal in the context of periviable delivery, where the decision to pursue life-support measures or palliation is both preference sensitive and value laden. We sought to develop a decision support tool (DST) prototype to facilitate SDM by utilizing a user-centered design research approach. Methods We convened four patient and provider advisory boards with women and their partners who had experienced a surviving or non-surviving periviable delivery, pregnant women who had not experienced a prior preterm birth, and obstetric providers. Each 2-h session involved design research activities to generate ideas and facilitate sharing of values, goals, and attitudes. Participant feedback shaped the design of three prototypes (a tablet application, family story videos, and a virtual reality experience) to be tested in a final session. Results Ninety-five individuals (48 mothers/partners; 47 providers) from two hospitals participated. Most participants agreed that the prototypes should include factual, unbiased outcomes and probabilities. Mothers and support partners also desired comprehensive explanations of delivery and care options, while providers wanted a tool to ease communication, help elicit values, and share patient experiences. Participants ultimately favored the tablet application and suggested that it include family testimonial videos. Conclusion Our results suggest that a DST that combines unbiased information and understandable outcomes with family testimonials would be meaningful for periviable SDM. User-centered design was found to be a useful method for creating a DST prototype that may lead to improved effectiveness, usability, uptake, and dissemination in the future, by leveraging the expertise of a wide range of stakeholders.

Date: 2019
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DOI: 10.1007/s40271-018-0348-y

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